Discrimination Is Breaking People’s Hearts

Discrimination Is Breaking People's Hearts thumbnail

Shantaquilette Carter-Williams was on the gym treadmill when she first felt an odd flutter in her heart. “I remember stopping and thinking, ‘That doesn’t feel right,'” says the now 43-year-old Dallas resident. She knew the importance and she walked or ran almost every single day. So she returned to exercise and completed her workout.

She was diagnosed with exercise-induced arrhythmia by a doctor and advised her to slow down her heart rate. Carter-Williams is a retired accountant. She tried different types of exercise. That was in 2012. Over the next six-years, her chest pain and other worrying symptoms led her to the emergency department a dozen more times. Every time, doctors sent her home with no diagnosis or any way to prevent it happening again. In June 2018 lingering back pain, stomachache and nausea led Carter-Williams to think she had the flu. She was working from home so she planned to go to bed earlier than making another inconclusive visit to the hospital. Her college-aged daughter entered the room as she was finishing up a phone call. Carter-Williams began to speak when a strange pain shot down her neck and jaw. She says, “I’d never experienced anything like it before.”

Her daughter drove her to the hospital. Carter-Williams started to vomit while they waited for their appointment. Carter-Williams felt a tremendous pressure, “like someone stepping onto my chest,” that overwhelmed her. She was given a pill to put in her mouth. Her heart began to race. She recalls that the hospital staff gave her a stomach injection and prescribed other drugs. Soon after, a brown-skinned doctor entered the room. He leaned over and held her hand, saying, “I don’t want to scare, but you’re having a Heart Attack .”

.”

After the specialist left, her cardiologist, a resident at hospital, took over her care. Contrary to clinical guidelines, she was discharged with no medication to prevent another accident. This is not a common situation. Roxana Mehran, a New York City-based cardiologist at Mount Sinai’s Icahn Medical School, says that guideline-based treatments are not always applied to all patients. “Women and underrepresented minorities are less often treated with guideline-directed medical and interventional treatments.”

Nine months later, at age 40, Carter-Williams had a stroke.

As an African-American woman, Carter Williams was at high risk for a heart attack. Despite this, Carter-Williams is among the most likely patients to be overlooked during screening tests or to have symptoms dismissed as not being heart-related. It is believed that obesity and sedentary lifestyles are the main risk factors. Discrimination can also be deadly: people who experience discrimination based on gender, race or other characteristics are more likely to die from heart disease in the U.S. as well as around the globe.

The understanding of heart disease has dramatically increased over the past 50 years. In the 1940s heart disease caused around half the deaths in the U.S. This epidemic triggered a flood of research that led to lifesaving, landmark discoveries. For example, researchers discovered that smoking, alcohol intake, inactivity and diets high in salt or fatty foods increase a person’s risk for heart disease. They found that high cholesterol levels and diabetes increased the risk of stroke or heart attack. For those who ended up in emergency rooms despite these measures surgical advances such as balloon catheters and stents or artificial vales made heart attacks less fatal.

The three children of ShantaQuilette CarterWilliams place their hands over their mother’s heart.
The three children of ShantaQuilette CarWilliams place hands over their mother’s heart. Credit: Gioncarlo Valentine

Over the years, deaths have dropped in most industrialized countries with higher incomes. However, the number one killer worldwide was again heart disease as a result of global research on cardiovascular disease risk. These new studies showed that heart attacks are caused by the same risk factors regardless of where someone lives or their socioeconomic status. The difference was that now about 80 percent of heart attack victims lived in lower- and middle-income countries.

” “For far too long we didn’t have high quality studies of cardiovascular disease that included people from lower- and mid-income countries,” says Amitava Banerjee a cardiologist at University College London. Research in the United States focuses on communities with higher incomes. And in the rest of the world, the focus was more on the differences between Western and Eastern countries than on their similarities–something that, Banerjee says, stems from “a history of colonialism in medicine” that aimed to serve expats instead of local communities.

These gaps have been the focus of

Now researchers. Researchers are now focusing on bridging these gaps. Because of long-standing biases, medical treatments have been less accessible or less useful for historically marginalized communities. These people are often burdened by risk factors like air and water pollution, not only are they denied access to medical care.

Chart lists six cardiovascular diseases that killed 18.3 million people in 2019 and shows percent of deaths caused by each.
Credit to Amanda Montanez, Researched by Miriam Quick; Source : Institute for Health Metrics Evaluation. This text was used with permission. All rights reserved. (data)

The biology of heart disease is universal. The biology of heart disease is universal. There are no differences in the treatment, drugs, or other interventions that can be used to reduce the risk of developing it. Despite this common foundation, most solutions to the problem were developed in a limited, Western setting. They do not account for social circumstances that could make it difficult for others to access diagnostics, preventive medicine, and treatment options. Shivani Patel, Emory University’s social epidemiologist, says that it is not possible to transport what we have found in high-income countries and assume that it will work in low-income nations. “There are powerful social influences that must be included in the .”

risk factors

Overlooked and Underrepresented

In 1947 the U.S. Public Health Service (now the National Institutes of Health) launched a study that tracked both the health and life habits of residents of the town of Framingham, Mass., and then looked at how those corresponded to heart health. The Framingham Heart Study, which continues today, and others in Europe and the U.S. have helped clinicians to understand how heart disease develops, worsens, and kills. They also know how to stop it.

In 1990 William Kannel, a former director of the Framingham Study, gave a lecture in which he reported that the study linked heart disease to a “lifestyle typified by a faulty diet, sedentary living, unrestrained weight gain and cigarette smoking.” Therefore, people could improve heart health by changing how they lived. The message was spread by public health campaigns all over the globe. The American Heart Association launched a campaign called Life’s Simple 7 in the U.S. that defined seven things (such as smoking, diet, and physical activity) that could reduce cardiovascular risk.

These measures are not as simple as they sound. Although the advice to eat healthier and exercise more is supported by strong evidence, it doesn’t account for the many people all over the globe whose lives are not like those of the predominantly white, well-off residents of a Boston suburb. “The current recommendations have failed because they fail to focus on social determinants and structural drivers” that can influence a person’s health practices, says LaPrincess Brewer from the Mayo Clinic in Minnesota. “Unfortunately, Life’s Simple 7 is not always delivered in the (*] sociocultural context

Consider exercise. It is not enough to keep your heart healthy, even if it is possible. Carter-Williams understood the importance of exercise, especially since her job required a lot from her. However, a treadmill was not enough to stop her heart attack. Others find it difficult to walk out the door. Lack of safe spaces to exercise, smog-filled atmosphere or cultural barriers that prevent women from walking alone often hinder or stop physical activity. Patel cites India as an example of persistent colorism that causes women, especially adolescent girls to stay indoors (and therefore be less active) in order to prevent sun-darkened skin.

Charts show total deaths and death rates from heart disease by country income level from 1990 to 2019.
Credit to Amanda Montanez, Researched by Miriam Quick; Source : Institute for Health Metrics Evaluation. This text was used with permission. All rights reserved. (data)

Other time recommending exercise is simply absurd, says Andre Pascal Kengne (internist, researcher, South African Medical Research Council). He points out that people in rural South Africa are at higher risk of developing heart disease. This makes planned exercise unnecessary. “Think about a farmer who works six to eight hours per day on a farm,” Kengne says. “If you tell him to exercise , what can you expect to achieve ?

Western diet recommendations do not take into account cultural differences in diets. Public campaigns that promote heart-healthy foods only reflect a subset of norms from industrial countries. They exclude most culinary traditions around world, including the U.S. Brewer points out that most people don’t lack knowledge or understanding.

Many factors can impede the ability to translate awareness into a change of habits: lack of culturally appropriate guidelines, financial insecurity, or inability to access affordable and nutritious food. Brewer states that community members are aware of the issues they face, regardless of whether it’s their ability or inability to put food on the table. She says that the problem is that many people find it difficult to follow diet or exercise recommendations due to their financial or social circumstances.

People living in poverty or in areas with limited food resources are more likely to eat high-saturated fats and sodium, and eat a low amount of fresh produce. In a study of 195 countries published in the Lancet, researchers found that such diets remain the leading cause of heart disease. This is a choice, and not a necessity. Banerjee states, “The truth is that the cheapest way of eating is often the most unhealthy.” High-quality processed foods are becoming more popular and easily accessible around the globe. This is due in part to subsidies that make junk food less expensive even in the most disadvantaged communities.

Charts show percent of heart disease deaths linked to each top risk factor and U.S. hypertension prevalence by sex and race.
Credit to Amanda Montanez, Research by Miriam Quick. Sources: Institute for Health Metrics Evaluation. Use with permission. All rights reserved. (risk factor data); “Heart Disease and Stroke Statistics–2022 Update: A Report from the American Heart Association,” by Connie W. Tsao et al., in Circulation, Vol. 145; February 22, 2022 (hypertension prevalence data)

In many low- and mid-income countries, the rates of obesity and diabetes rose in urban areas at first. Patel states that rates are also rising in rural areas. These changing trends, which are likely leading to more instances of heart disease in rural areas, indicate that the condition is no longer a disease of affluence and sedentary living.

Patel lived for a while in Juna Mozda in Gujarat, western India. He now focuses his efforts on understanding heart disease risk factors within communities across the country. Juna Mozda is home to most Adivasis who are members of tribal communities. Patel states that Indigenous communities have the highest blood pressure rates, and are often the most vulnerable. *

Ishwar Vasava, a farmer and social activist, has observed a shift in the way people eat over the years. People are now eating more sugar, rice and traditional grains, and desserts and fried foods are all part of their daily lives. Vasava also says that alcohol use is a concern for young men returning to the village from years spent working in nearby industrial towns. He says, “I don’t see any difference between our lives in the village and those of the city anymore.”

Urban and rural, telling people to eat healthier and drink less alcohol will not address the rising incidence of cardiovascular disease. Joel Kaufman, an epidemiologist from the University of Washington, says that “we tell the story” that people can reduce their risk. “But people cannot change their lifestyle and diet .”

.

Shown clockwise with their mother, ShantaQuilette, and father, Roy Williams, are daughters Sanaa and Nyaira and son Adysaan.
Shown clockwise together with their mother ShantaQuilette and father Roy Williams are daughters Sanaa, Nyaira, and Adysaan. Credit: Gioncarlo Valentine

Biased Benefits

Lifestyle-based changes have clearly contributed to a decrease in heart disease deaths in high-income countries. Smoking bans and awareness campaigns, as well as policies that limit tobacco use, have all played a significant role in reducing the number of deaths from this disease. Advancements such as prescription drugs and better screening tests have also been made. The effectiveness of medications for diabetes, hypertension, high cholesterol and other conditions has been so impressive that they are now included on the World Health Organization’s essential medicines list for all countries.

The blood tests that are most commonly used to prescribe these drugs do not work for everyone. They were created using data from European men. If an individual is not overweight or anemic, the hemoglobin A1C test to determine if they have diabetes (which, if left untreated, can lead to heart attacks) will not work. The most common cholesterol and triglyceride tests are not as effective in assessing risk for Black Americans in the U.S. Even if test results are normal for triglycerides levels, statistics from Centers for Disease Control and Prevention indicate that Black people have higher rates of hypertension compared to white, Hispanic, or Asian populations. Anne Sumner, an endocrinology researcher at National Institute of Diabetes and Digestive and Kidney Diseases, said that even though tests show normal levels of triglycerides. “Health disparities do not only relate to not having access care. Access to the right screening tools .”

is essential.

Charts show top five causes of death in 2019 and top five heart attack symptoms by sex.
Credit to Amanda Montanez, Research by Miriam Quick. Sources: Institute for Health Metrics Evaluation. Use with permission. All rights reserved. (death rate data); “Sex Differences in Symptom Presentation in Acute Coronary Syndromes: A Systematic Review and Meta-Analysis,” by Roos E. M. van Oosterhout et al., in Journal of the American Heart Association, Vol. 9; May 5, 2020 (heart attack symptom data)

It is difficult to know how much damage is caused by inaccurate screening tools. Carter-Williams reviewed her medical records shortly after her heart attack and discovered some abnormalities. When she asked her doctors about the results, she says, “they really could not give me an explanation other than ‘it’s not high enough for us to be concerned.'” She only began to receive cholesterol medication 10 months later, after her stroke.

Even though test results are accurate and reliable, there are still barriers to treatment, especially in low- or middle-income countries. For some people, such as the farmer who works manual labor, it can be nearly impossible to get to a clinic. According to Kengne, South African Medical Research Council, subsidized health care means that many South African patients don’t have to pay for preventive medication. He says, “If they can reach the clinic, the medication will be free.” “But the transportation costs to get there” are the problem.

The high cost of medication and their inaccessibility make it difficult for many countries to access drugs. In a 2020 study of 21 countries published in BMJ Global Health, researchers linked the inaccessibility of necessary medicines to higher odds of disability and death from heart disease. Drugs that treat diabetes or hypertension are available to only about 50 to 60 percent of the population in both high-income countries and low- and middle-income countries. The cost of brand-name medication for a month typically runs to six days’ wages. Generics, on the other hand, can be purchased for about two days. Jaideep Menon is a cardiologist at Amrita Institute of Medical Sciences and Research Center, Kochi, India. “The most common reason people give for me to stop their medicines is financial,” he says. “The drugs aren’t available in a nearby pharmacy

Gender, age and caste all play a role in who receives care, Menon states. These factors can lead to discrimination, which researchers refer to as “social deprivation”. This is when a person’s access to health care is restricted.

These biases aren’t limited to low-income countries. They can also prevent access to high-quality care in countries with high income, especially if someone is Black, or female. Mehran, a Mount Sinai cardiologist, said that discrimination is where we see a gender divide and higher heart disease rates in women. “This includes the U.S. where they face discrimination based on their income, education, or other factors

Women in cardiac distress are less likely than men to be seen or receive timely care. Heart disease and stroke cause 35 percent of deaths in women, but their symptoms are different from men’s, and surveys show that physicians are less confident diagnosing heart attacks in women than they are in men. They are more likely than men to attribute symptoms of heart attack to stomach upset or mental disorders. Women, especially young Black women, are less likely to get treatment, whether preventive or after a heart attack.

For her part, Carter-Williams claims that even though she was diagnosed with cardiovascular problems, she was told that nothing was wrong and she should “stop worrying about her job.” She was not tested for blocked blood vessels, which can increase the risk of another heart attack. Despite having a family history with heart disease and previous blood tests that showed high cholesterol and high blood pressure, she was not prescribed any medications.

Nine months after her first hospitalization, Carter-Williams fell ill at work and was unable to walk or recall her name. The hospital doctor suspected that Carter-Williams was having seizures. Carter-Williams was not convinced by her husband. After she was discharged, Carter-Williams and her husband were not convinced. They found a new neurologist, an African woman who diagnosed her with having suffered a stroke.

After a stroke, Carter-Williams was unable to walk and keep up with her job. She took early retirement at the age of 42. She is now on the mend and has taken steps to lessen her chances of discrimination. She says that after eight years of missed diagnoses she fired all of her doctors. Her new care team is either Black or from other minority groups. “I wanted people who could see that there is bias .”

Ground Realities

Inequity endures due to its roots in so many sources: conscious and unconscious bias, centuries of racism marginalizing persons of color, a history that forces those with the least resources and power into the most polluted environments.

This legacy is still a reality for people of color and those with low socioeconomic status all over the world. Research on the social determinants and health of health is still behind drug development for hypertension and diabetes. Starting in 1988, 40 years after the Framingham study began, researchers launched three similar efforts to understand high rates of heart disease in Black, Hispanic and Native American communities. These and other studies have shown the importance of discrimination in the risk factors for diseases over the years. One study in 2017 in JAMA Internal Medicine found that Black people who lived in more segregated neighborhoods experienced greater rates of hypertension. Their blood pressure rose when they moved to more diverse communities.

“Segregation can be used as a proxy for many of the things we think about when we think structural racism. This includes education, earning potential, wealth, and so on,” said Kiarri Kershaw, a social epidemiologist at Northwestern University. Other research also shows that discrimination is the main issue. Studies in Brazil, the U.S., and other countries show that people who are subject to everyday discrimination such as being overlooked for promotions or harassed by their neighbors, tend have higher rates hypertension. These social experiences are often layered on top of long-standing policies and regulations that perpetuate inequity. Discriminatory housing practices and the construction of mines, factories or freeways often lead to low-income communities or marginalized communities that are both exposed to the effects of air and water pollution.

Food policy has a similar bias. Many countries have lower taxes for highly processed foods like refined sugar and oils. People who receive government subsidies are more likely to consume these products, as they are often poorer. They are also less likely than others to be able afford medications for chronic conditions like diabetes or hypertension that are a result of excessive consumption of these foods. The burden of infectious diseases continues to increase, so funding to improve medical care has not kept up with the rise in cases.

Changing the social and political system that contributes to heart disease is a complicated and difficult process. Global policies continue to prioritise economic development over the health and well-being of the most vulnerable populations around the globe. Menon states that marginalized groups are more likely to lose on all fronts .”

This article is part of “Innovations In: Health Equity,” an editorially independent special report that was produced with financial support from Takeda Pharmaceuticals.

*Editor’s Note (5/20/22): This paragraph was edited after posting to update the description of Shivani Patel’s work in India.

This article was originally published with the title “Discrimination Is Heartbreaking” in Scientific American 326, 6, (June 2022)

ABOUT THE AUTHOR(S)

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    Jyoti Madhusoodanan is an independent journalist based in Portland, Ore. She covers the life sciences, health equity and bioethics for Science, th

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